Cerazette: 2 Months On

I'm nearing completion of my second month on Cerazette. Before going on them I read through the leaflet, as you do, checking out the doom and gloom side effects. Had a read of a few forums, some okay, some not so okay. I found a lady's blog who had noted her side affects as she went and I totally intended to do this but.. it didn't happen, so I'm playing catch up!

Keep in mind - first I am using these as a means to stop my period in hope of preventing Endometriosis growth, not for contreception. Also, I have seronegative APS, Raynauds Disease and various other bits so my medications for these may

Week 1 - The headaches! Goodness, they were pretty special and rather constant. Nothing that some paracetamol/neurophen couldn't help. Acceptable comprimise compared with potential impending chemical castration!

Week 1-4 Longest period, eek! Wasn't sure it was going to stop actually. I assume its meant to be..urgh, for want of a better word, draining you. Mild cramps, nothing special.

Week 2-6 - Nausea! Nothing on the scale of norovirus or allergic reaction. I guess you could call it constant motion sickness. It was often there in the background at most times. Unpleasant but not the worst thing in the world. Luckily either I don't notice it anymore or it has passed.

Aside from those two things I don't think I've had anything horrible that can specifically be linked in to the drug. I think I'm one of the lucky ones!

A Year On

Goodness, I really should update this more often. My only excuse is that when you go through all this madness, it takes a lot of energy to sit here and go through it all again when all you want to do is distract yourself as much as possible.

I wish I could update this with happier news. Me, being me, it's all complicated and silly.

Now my biggest challenge - how to summerise a whole year. I can't really so I will have to skim through a lot. As I sit here though on my latest new medication with my new batch of side effects I feel its important to get things a little more documented.

Mirena Out (Jan 2014)

After much debating with my brain, I decided to get the Mirena Coil taken out. I went to the doctor and the whole procedure was barbaric and horribly painful. Now every doctor I've seen who's had to have a look 'down there' is always really shocked about how much pain I'm in, some can't perform an 'examination' at all because I'm pretty much screaming and my legs go to jelly and shake like mad.. this isn't normal for peoples so don't be put off if you need to get the coil checked. Some people have it taken out under general anaesthetic and, for those like me, I can bloody understand why. It literally felt like she was ripping my womb out of my body. I was proud of myself that I'd got it out FINALLY.. free. I felt so much better for it.

Depo In (Feb 2014)

My next port of call was what to replace the coil with. I'd read a lot on the benefits of Depo injection regarding Endometriosis control and so I went for it. My GP asked me if I'd prefer to take a tablet form so if I had troubles with it, I could just stop. I thought I was being brave so I just went for it. Bugger the side effects. Then I saw the needle.. I honestly nearly chickened out it was so long! Then as I was bracing myself for some pain, quite literally in the arse, he said it was done. I literally didn't feel a thing. Now, I inject myself every day and it's a certain amount of pain, but he must have been a very talented injectionist.

I can't remember any side effects that stood out at first. No weight gain, illness, moodswings. It was great! Finally, I'd found something awesome that might be the answer to controlling everything and eradicate the possibility that hormonal issues were aggravating/causing some parts of my illnesses.

Legs-no-more. (March 2014)

At the beginning of the second month, one evening, I went to get up and my legs wouldn't.. work. They wouldn't take my weight or move as I wanted them to. They weren't numb or completely paralyzed, but they just didn't work properly. Nothing I could do would help. It was heartbreaking. I had no warning, I didn't feel any more unwell than usual. Then came the irrational tiredness, more so than I'd ever experienced. I almost couldn't breathe trying to get myself to the top of the stairs. I didn't know when or if I would get them back again. I could only sit or, if I had the energy, lug myself about on crutches which were incredibly difficult. No driving and being back to being completely dependent on my parents for pretty much everything.

Then one day they just... worked again. 'Nothing' could explain it. The only thing I could attribute it to was the Depo injection (at that point). I decided not to get another, just in case. *sigh*

It was all getting bloody stupid. Nothing made any sense..

Yet Again. (July 2014)

Come mid-July a repeat of the above happened. I couldn't believe it. Around about this time I decided to keep a better 'diary' of when things happen and what happens. I know this sounds a bit OTT but I have a memory of a goldfish now and I don't think it's going to get any better. So on 13th July the legs went followed by the strangled voice. Now with me, there is two very different loss of voices. Dysphonia and Dysarthria. Dysphonia, to me, is more of a constriction, like someone is strangling me and my vocal chords won't work properly due to compression. Dysarthria is when I can think the words perfectly well but when I go to speak the muscles and voice don't connect so I just make stammering noises, it sounds.. awful when/if some sound does come out. In this case, it was the Dysphonia. I know this is vascular related because generally if I tilt my neck in a certain way or put compression on certain veins (I can't do this for long) it allows me to talk perfectly and 'removes' the pressure. Dysarthria I can do nothing about. So. Both Dysphonia and loss of legs on the 13th, which lasted for about 10 days, and the voice only 3 days. They came back to life and then my period followed. 2 days into my period, my voice went back into Dysphonia mode for 4 days, on and off, which was the end of the period. On the final day, I had a horrible bout of IBS and that was that.

The following months mirrored this but replace the symptoms on the 13th for variants of leg/voice/pain problems. They all fall around the same time each month and follow the lunar cycle closely. Looking at it, the worst starts two weeks before my period, the period happens, then it ends in crampingness and pain, then repeat the following month.

Too many symptoms to mention really and that's not even going near the emotional side of things.

Gosh this sounds like so much moaning. I don't mean it that way.. Just got to get as much down as possible.

Endo Operation #5 (November 2014)

Anyway, just to be on the safe side I asked the doctor to refer me to the person who is meant to be Kent's leading Endo consultant. Well, when I went to the clinic I saw his registrar who couldn't perform the physical 'investigation' due to how much pain I was in. I was crying, my legs were shaking and I was a mess. He turned up, and he was a very kind and nice man seemingly. He suggested Zoladex but agreed to a lap. He couldn't understand the registrar's notes so he re-wrote them.

Pre-op was horrible and confusing - and very long. They didn't tell me what to expect at all and if I hadn't had accidentally gone back to the nurse's bit after getting the 'bowel prep' I wouldn't have known I had another consultation. I saw an entirely new registrar and she took her own notes. Oh and EEG lady made me strip to the waist - humiliating. Never been made to before (5 prev) and friend that's a nurse says its not needed.

Bowel prep was so awful that I only took half of it. Five hours in the bathroom - the cramping and runs weren't the worst of it although it wasn't pleasant. The vomiting and severe nausea was another matter. Never again! Certainly not 'that' stuff.

Now keep in mind, as directed, I hadn't been able to eat 36 hours prior to the operation so I was beyond hungry. We checked in just before 8am and waited... and waited... and waited. Uncomfortable chairs, awful television. It literally felt like I was waiting to be processed. Not at all like the experience a fellow lap patient experienced (I read her blog and it was an incredibly positive time where she was given a room, told what was going on etc). We were told nothing. Saw the registrar and another doctor and they checked I'd done the bowel prep etc, then sent me back. No more information on timings. A nurse came and got me later and took me to a side room, measured me for the stockings and filled out my paperwork using ANOTHER PATIENTS questionnaire. Had she not left the room and I happen to notice she'd put down that I had had my tonsils out (which I haven't) it wouldn't have been picked up on. Not only is this slightly wrong, it's a breach of patient confidentiality and they're not actually checking the name on the questionnaire matches that of the one having the operation. Oh well. Yet again, no time frame was given.

Also - visitors, not even one, can come further than the waiting room. You're not given an idea when they're meant to leave and you won't see them again until they pick you up. For a nervous patient, this is terrifying. I understand why, but it's not good. I decided to bite the bullet and told my parents to go home, I didn't want them stuck there in those horrible seats as well, I didn't want them to go but it seemed right. So there I was, on my own and there seemed to be a girl near me who looked very unwell. It wasn't until hours later another nurse came by and said I was about to be taken. It seemed both me and the girl had been waiting for the first operation to finish, I was next and she was maybe last. However, the nurse took her aside and told her that there was another patient to go (me) and she became very upset and made a phone call. I don't know what happened to her in the end but for god's sake, surely people can communicate and work by some type of time frames to let patients know what's going on?! I felt so bad for her. I hope I was mistaken.

So, the nurse came to take me down corridors that didn't even have lights on and were empty. She asked me to get changed into the gown and took me further along into yet another waiting room. Cold and empty with no people about. All very sterile (I guess a hospital should be!). One half of the room for females, another side for males.

The team that put me to sleep were really kind and reassuring. Positive point. Next thing I remember is pain from the thing being yanked out of my neck (it really hurt!), then violent shaking and one of the nurses telling me to stop shaking.. I mean.. sure because I can really control that!

The nurse on the ward was very nice. I saw one girl had her boyfriend with her so I wondered why we were told no one was allowed in there with you. All I remember thinking was "I don't care how much it hurts, I'm going home asap!". So you need to eat and pee. Both done I was ready to get going. Luckily my parents called the ward at the right time, no one had called them after the operation at all to let them know things were ok. Parents arrived a little while later but were in the waiting room for ages as there's no one in the waiting area to actually let the nurses know they are there which is utterly ridiculous. Its a nice clean hospital but there are some serious communications issues that really add stress to all the visits I've made there relating to this issue.

Shipped home with no painkillers (all that was on offer was paracetamol).. what a joke! Not like any of my other operations. Certainly will be saving up for private treatment should the need arise in the future. Weird thing is, yes all operations are different, but this one couldn't have lasted more than an hour based on the time I went in and woke up. My previous one was 4-5 hours long and very thorough. Having such extensive stuff done in the past and them finding 'nothing' this time was very.. odd!

I saw no mention that the things (on my theatre letter) of the areas I'd asked to have checked, had been checked. I am yet to write to the consultant to see if he can clarify this problem before the next consultation.


So - not a fun experience at all on that front but we can 'assume' endo isn't the culprit for everything. No easy fix either way! It's well past 3am now and I need to get my head out of sad medical land and distract myself with happier stuff for a while. Will continue on tomorrow (I hope!)

Unless I get distracted for another year.

Update & Dysarthria

It's been such a long time again!

Appointments

Well, a trip to a friends house in Wales (mid November) resulted in my health going a tad downhill. It began while we went out to a few shops.. my legs went all 'gluggy', then shaky.. this feeling spread through me and, well, it's hard to put into words but it all felt wrong, chest and breathing wasn't normal. The lights went super bright and I knew I needed to sit down very quickly. Seems that if I stay sitting things get better.

One evening the strangling feeling returned in my neck and I couldn't speak. This lasted for 2 hours before I zoned out and went through all the 'suspect TIA' symptoms including the paralysis and face droop. I emailed the Lupus secretary and she passed this on to one of the other Drs there and phoned me back the next day saying that I'd need to be seen (privately) in clinic. Obviously.. I couldn't seeing as I was in Wales. Their other suggestion was to go to the GP to get checked. That also wasn't possible so I booked an appointment with my specialist (PK) for the following week.

This appointment resulted in very little. I was asked what happened, my legs were checked and pain in the lower spine was discovered (yet very unrelated). This became the focus of the consultation and I was dismissed with an MRI form for my pelvis... I'm not really sure why. My legs constantly ending up freezing cold seems to be irrelevant along with the other symptoms. I had a message on my phone from PK saying there was nothing wrong with the scan.

I missed my Lupus clinic appointment (phoned beforehand) because I'd had a rather nasty attack and couldnt actually make it there and they sent me a follow up appointment for August 2014.. wonderful. It seems any hospitals/doctors don't understand the concept of the patient actually being ill and the issues this results in when having to travel a long way from your home.

Dysarthria

On 21st December, in the evening, I had a strange burning swelling come up over my lip (not sure if this is relevant or not!) .. this sensation was very odd and it looked like I'd been bitten. About half an hour later it had gone completely. I was eating some pineapple then my tongue started to burn really badly, I thought it was swelling so I tried to tell my parents and a slurred mess came out. I couldn't speak.. I was able to think the words fine, I felt fine apart from the burning but suddenly the words wouldn't come out. I could start words, make sounds yet the words would come out in 'pieces' and slurred stuttering mess and when I did get small sounds out, I'd repeat them several times without meaning to.

We hoped by the next day it would be gone and everything would be back to normal. It wasn't like a normal attack. Unfortunately it didn't go the next day, or the day after. So, on the 23rd December I went to the GP. She thought there may be a possibility that there had been a small stroke and thought it best that I go to A&E. She phoned them before hand and spoke to the registrar, gave me my letters to pass on. She told me that once I got there I wouldn't need to go into the 'usual' bit as I'd been checked and put a note on the envelope to bleep the registrar straight away.

Hospital Again

Well, that was a joke. Obviously I couldn't speak so I tried to indicate to the receptionist that the Dr had said not to go into the normal 'system' but the receptionist was just a moody girl who was quite rude and disregarded what it said on the letter because it didn't match 'their system'. Not a great start. No matter if you have a letter or not, you go into the same system and wait just as long as having no letter. I don't know if GP's understand this but the same thing happened with my dad.

I think I waited 2ish hours until I was seen by the registrar (not even sure he was the one my GP had spoken to). He looked really really confused, didn't really know what to do with me. He wanted to get the stroke theory checked so said I would go to the stroke ward (oh god no.. ) have a CT that night then if it showed no bleed on there then have MRI the next day and be seen by the stroke and rheumatology teams. I just wanted to go home really, especially because the next day was Christmas eve and I had so much cleaning to do!

CT done, they moved me to CDU instead of the stroke ward, thank goodness! The hospitality and nursing staff were -so- nice! It was such a difference to when I'd been on the stroke ward. They made me tea and toast (I had an amazing knack to having scans over mealtimes) and were really kind.

Ward Dr: Lady doctor came round the next morning. Told me nothing had shown on the CT but she was sure it was probably a small stroke that I hadn't noticed. I would be having an MRI later that day and be seen by someone from the stroke team. She told the Jr doctor that whatever the result of the MRI, she wanted the stroke Dr to make a follow up plan. She mentioned the malformation of the brain but dismissed any involvement.

Stroke Dr: It was one of the doctors from my stay 2 years ago. He smiled and was friendly, said the MRI scan was 'mostly normal' and claimed it was 'my brain misfiring like last time'. Unfortunately I couldn't speak so there's not much I could say or do. The 'misfiring' of two years ago was actually a misdiagnosis related to the APS/Raynauds and the 'fucntional' diagnosis back then was made by a doctor I had never seen and didn't work in that hospital. This misdiagnosis also held up my actual diagnosis/provision of medication by a year as whenever a doctor saw 'functional' they believed it to be my brain making it up.

He then went on to ask about my mother... No follow up was given and no further involvement from the hospital or assistance in regards to my speech.

I'm really shocked that firstly, someone in that hospital role can be so narrow minded when 'diagnosing' someone. It was very clear that the medical staff did not understand APS or the medications that I was on, they didn't even have it in stock. Luckily I brought my own.

I can't really describe how frustrating and saddening it is not to be able to use your voice. Everything that's in your head can't come out, it just bottlenecks and your expression and everything your voice describes about you is trapped. You are suddenly limited to a few sounds, paper and typing. People so easily misinterpret what you are trying to tell them, yet you can't full explain. It's not just the words, its the expression and tone that you speak in. You never really know how important your ability to speak is until its taken away. So most of Christmas Day and Boxing Day was spent unable to speak and just watching.. but the main thing is I WAS HOME! :D

Theory

The fact is that since it's been colder the attacks and symptoms have increased. This is also around about the same time two years ago that I suffered with a similar loss of voice - just not quite the same. I also have problems when the temperature is too hot.

I already have Raynauds disease and auto-immune/connective tissue conditions. Things are not going to work as they should. We've known this from age 14 with my ovaries not working properly, then the Endo growing all through my abdomen. Now..this.

It is clear to me, and to anyone that knows me and has seen the attacks, that this is vascular. It can be displayed when I've got the voice 'strangling' by compressing blood flow it would result in the voice block moving and speech returning. Bending the neck in a certain position also results in the same. This can only be shown when dysphonia is active.

With this assumption in mind, last I found some spare Nifedipine 5mg capsules (normal release) and decided to test a theory. I'm currently on 10mg (modified release) twice a day. I took extra normal release Nifedipine and amazingly, soon after there was a sensation in my neck and the voice returned. This seems to only last for the duration of the capsule. If Nifedipine is used to enlarge the blood vessels then surely this has something to do with bloodflow or vasospasm in the neck area.

Is it really the cold causing this narrowing of the vessels, or something else which displays like Raynauds? With the added symptoms of APS and now (as written on my discharge letter) S-SLE. All I know is that each month, around the same dates I've had small attacks and voice loss. Could this be linked to Endometriosis or the Mirena coil? There's only one way to test this, but with the thread of Endo symptoms returning I'm hesitant to change anything. Either way I end up with horrible symptoms and treatment limited to the education/willingness of a medical professional.

I'm just -so- lucky to have had such amazing help and support from my parents and a few close friends, they've been incredible, even though they all have their own things to cope with. Without them I don't know how I would cope with all this, I really don't.

Conference Speech

Recently I attended a medical conference in France, where I took part in a presentation (by my GP) in regards to my 'journey'. The focus of the presentation was to encourage patient participation with their diagnosis and treatment.

The whole experience was.. new! I made it through a plane journey (yeeey) and didn't feel like I was going to pop on the plane like an overcooked hot dog. Made it there and back again, with a few bumps along the way, but what matters is that I did it! Big steps.

Anyways, I'll do a proper write up later but this is the little speech that I did as part of the presentation:

"The truth is that whether its the right thing to do or not, more and more patients are using the internet to research symptoms. Sadly it appears that a vast amount of confidence and trust is missing between Dr and patient - most probably due to the outcome of a consultation, innacurate medical letters or the manner in which the patient has been treated. Patients in this situation seeking answers or information will inevitably use the internet, and with this reality in mind, I believe it’s crutial to encourage the best use of his tool possible, with the GP’s support. However, I feel its more important to have a good relationship with your doctor that allows discussion, without the risk of being seen as a self diagnosing, anxious, hyperchondriac and allowing the patient some credibility in their research. One doctor can not know every detail about every illness, and the unwillingness of some medical professionals to accept this has cost me over 5 years of my adult life.

Most people i know feel that they can't even talk to their doctor, they are simply not interested or don’t have the time. I believe that working with your doctor can minimize the risk of finding ‘worst case scenario’ situations online which could give the patient some peace of mind. This alone could save precious time, which may have lead to a spiderweb of unnecessary appointments and tests in an already heavily strained medical system. 

I know for certain that without the trust of my gp, the advice from members on healthunlocked and my own perseverance and research, I would not be healthy enough to come here today or have access to the medication that's given me back some of my life, with all the above going against what I'd been told to do by various consultants.

For me, the Internet has played a crucial part in my diagnosis and treatment, for which I am unbelievably grateful. "

More soon!

Random Health Memes

I'm tired of being broken.. Innumerable things that just won't go away or pick just the BEST times to get worse. I'm sick of the pain, the meds, the utter lack of control. I'm tired of having to pay the price for every 'fun' thing I do. The feeling of failure is just wholly overwhelming and .. I'm tired of being such a painfully dull excuse for a human being.

So what do I do? Hide in a corner and cry while waving a 'feeling sorry for myself' flag? Well seemingly that would achieve absolutely nothing and further alienate people around me. Venting? Where would I even start? Everything and nothing. Life. So, writing nonsense on a blog is always the way to go! Also, chronic illness meme's always have a way to make one feel better. So here are some of my favourites!

And this is why I will be forever alone!

The best by far! <3

Oh.. and I just nearly swallowed a gnat.. Mmmyummy!

The Appointment

Clexane Trial


C&P from a question I wrote for the healthunlocked forum regarding the trial.


"I'll try to keep this short but, I'm a little stunned by my whole experience I feel I may have to pinch myself to see if it's real.


I've been put on a Clexane trial - 0.6 injections + 75mg asprin per day (S-APS). I don't find the injections that painful and the bruising is a very insignificant price to pay for hope.


The first couple of days were like I had new limbs, everything felt different. My symptoms had already started to improve after such a short space of time, is this normal? I could think and coordinate better. I had these strange travelling pains, deep in my skin.. it started in my elbow, then it was in my leg, then knee. All I can describe the pain as is I once had a very painful injection deep into my wrist, it felt similar to that. Those have gone now however I do get the occasional small (2mm) lump in my knee which then turns to a bruise and goes away - I've only seen this happen before when I was thrombolysed last year. If I stand for long I get some small bruises in my knees too but that's really not a worry. The 3rd day I got a horrible headache that lasted all day.. then went away and came back a few times but since then it's not been a problem. My tinnitus has changed sound, it's there all the time but it's quieter. My legs hurt less, less electic shocks, less muscle spasm. My facial rash has improved significantly. I still get a couple of small blister-like craters appear but before they really burned and stung. I'm on the third week now and I'm able to be more active during the day and actually do things without bringing on an attack. I have Reynauds also, so the cold days have been much more unpleasant, but not as bad as they were. My leg circulation is seemingly improved too, there is hair starting to grow again where it had stopped (sounds yuck I know). I almost cried the other night because I did a whole day of general house stuff and.. I managed it! Sounds so stupid but it means there is hope of a life.. and job and future! Other things have improved also, my abdominal pain and digestion for a start. All my other general symptoms from the conditions I have just seem 'lighter' but more defined.

Basically I wondered if this is 'normal'? I have this slight fear that the Dr's that have been trying to convince me I'm mad are right and the syringes are just filled with water.

Oh, one more thing, the tingling/static sensation across my nose has not improved at all however, I'm not sure if this is related in any way. "

I recieved the following answers:


"All sounds quite normal to me actually. Everyone is different and their reaction to a Heparin trial will be too. However most people that are going to see an improvement in symptoms usually do so in the first few weeks and it seems you are doing the same. It may be that dosing may have to be fine tuned but you seem to be making progress - well done.

"Hi there, I am guessing your medical team/doctor is keeping a close eye and you come up o this medication, but it all sounds as if it is going in the right direction for such early days. Well done. Mary F x"


"Hi, Yes, I found the same thing when I trialed Heparin and this continued on Warfarin, for 7 years, but then I seemed to get worse again. I'm now on Heparin for life and feel much better than on Warfarin.

Best wishes. "

"Great news. I have twice experienced the miraculous effects of heparin .It was lovely to read your detailed description of the changes you are experiencing. I think you should pass this on to your doctors. I would recommend taking things steadilly and increase your activity gradually. I think that the sensations and changes are because your blood flow is improving throughout your body. Its so good to feel better isn't it? So pleased for you Ann"

"So great to hear this! I too felt like a new person within a few days of starting Clexane in Feb last year. I later downgraded to Plavix but my symptoms returned so I'm now back on Clexane long-term until I'm living somewhere they can start me on warfarin. Prof K says he has patients 10-15yrs+ on Clexane - the injections are a minuscule price to pay (unlike the financial price of them...) for feeling so much better. Do keep a record of how your symptoms change over time, it's amazing how quickly you forget, once you are feeling better. Really pleased for you x"

And my final response:

Hello everyone,

"Thank you so much for taking the time to respond to me. Your answers reassured me and helped me greatly *hug*. I really, really appreciate it.


I had my follow up appointment. We talked about the symptoms and the improvement, he still seemed very keen to find out where I was with neurology (which is nowhere and no one - they passed this all off as anxiety) and when my last MRI was etc. This concerns me a bit as I wonder if I'm just going to get piled back onto neuro. However, he then went on to talk about medication and longer term treatment as he believes this is seronegative. I wasn't too keen to stop the clexane to test what happens just yet or go onto the warfarin so I've got longer trial of clexane for now.

I'm having a very rough day today, my legs hurt a lot, as does my neck. Yet... without Healthunlocked and Facebook I would be in a far, far worse situation and words just can't describe how grateful I am for the communities here. I literally cannot put that into words but.. it's given me the possibility of a life as close to normal as anyone can have with this amount of illness going on. Thank you."

It's been a long time.. Again.

The time between updates seems to be growing larger. The simple fact is that going over it all while still going through it is a little unpleasant, that and I'm rubbish at updating things.

 

  [Edit: March posts have been pre-dated'ly added in just after I posted this update.]

 

Winter has been utterly horrible. When January came around things started going downhill again with a new range of symptoms that were gradually getting more and more alarming. I'd lost my voice again, though not as badly as before, it was more an up and down thing. I'd started to get electric shocks again, but this time they were different, more widespread. I also strated getting a type of migraine in the side of my face. Then there was the nose electric current that didn't stop, I can't really describe how annoying and odd that was. I found myself using pore strips just to numb down the feeling. During this time I was unable to sleep during two or three nights of the week so I ended up like a bit of a zombie. The face droops/spasms became more frequent. I look at a copy of my calendar for January and see things like 'HFS.. jaw migraine.. limb weakness.. shocks.. clumsy legs.. electric shocks arms, legs and feet.. base of spine spasms.. heart palps.. up all night with jolts.. no sleep..etc'. Needless to say, January was quite horrible, but it was about to get more horrible. My GP started me on Lyrica to help with the shocks, cramps and spasms and, though they helped a lot with the nose issue, the other bits haven't gone away.

Of HFS

Finding out (after a Google image search) that the facial droops were actually referred to as hemi-facial spasms was a step in the right direction it seemed. The explanation of how it was caused seemed to make sense in terms of what I was experiencing. So, time to find a specialist. That done, I traveled up to London to see a consultant neurologist. I went in there thinking that this would be an easy fix, just sort out a bit that's caught and then I'd get better. It was, sadly, not meant to be.

I emailed the consultant prior to the appointment to see if this was something that she was able to help with. I believe her words were (quote) 'after reading your story and looking at the pictures, i understand that you are suffering from facial spasm; to determine the nature of the spasms, you would certainly benefit from a consultation with a neurologist specialised in movements disorders'. In short.. her. When I got in there she looked at me and begun to ask me about the situation, as if she had totally forgotten my entire email to her. She also did not have the referral letter. I tried to keep it as 'to the point' as possible and had taken along photographs. She couldn't seem to grasp the fact of where I lived, so instead kept naming a different town. She didn't want to hear about my other medical conditions in relation to my symptoms, instead seemed far more interested in pinning my life circumstances to her diagnosis. She didn't want to know about the physical symptoms at all. Where have we seen this before? After seeing a 'positive' hoover sign she had decided to diagnose me with FND - Functional Neurological Disorder. Even though more modern techniques suggest the way she performed it is not an accurate way to test as once thought as the hip gives false power on the pressure down. Anyway..

The doctor told me it was very very serious and I've had it too long to be able to do anything about it myself and I could soon end up disabled. She didn't know who to refer me to and stated that I'd need the top neuro-physiotherapist to help. However she referred onto two people who worked in the same private clinic as her, an osteopath and a hypnotherapist (she said CBT would not be effective) and assured me my insurance would cover it. She stated my brain and all tests were clear - even though she had seen no MRI, clinical tests or even the referral from my GP. I was told by her that if I didn't accept the diagnosis, I had no chance of potential recovery. So when I got home it hit me and I just cried and cried. Everything I read was awful but at least I could see people going through similar stuff. Maybe at last there is some way to fix myself? I tried my hardest to come to terms with it all and accept that this is what it was.

When we received her consultation letter it was full of mistakes and inconsistencies. On finding out that my insurance would not cover her referrals I wrote to her asking what I should do... and I heard nothing back.

Who are we meant to trust? As it stands I'm just so confused. There are some last things to try but aside from that, I don't really know what to do with myself! It feels like I'm falling apart and I don't know how to make it stop.

All I want is my life back. A job, a partner, maybe even a family.. definitely a cat! I hate being a burden on my parents at 27 years old!!

FND Diagnosis Process

A few weeks later I read a medical journal about techniques in diagnosing FND and right from the start it appears she had angled the whole consultation in the way outlined on the paper, which made me furious that someone would purposely find items to support a theory rather than look at a situation as a whole and judge it fairly. These are doctors, people who are being paid a lot of money and should feel at least some duty towards their patients. I have a feeling most just see pound signs above people who have confusing illnesses, desperate to find answers.

I wrote an email to the doctor who wrote that paper, who was an incredibly kind and helpful man and actually wrote back to me on the matter.

"I have recently been diagnosed with Functional Neurological Disorder (functional stroke/weakness/facial spasm/vocal dysphonia) and came across your article on the condition and the suggested ways in which doctors are encouraged to diagnose the disorder. I only write to you to express my surprise as the content is rather disheartening to read from a patients point of view and somewhat discredits the whole diagnosis process. I am struggling to accept the diagnosis and after reading your article I am even more unsure. I have just realised (after writing all this!) your article dates from 2005 though I still feel the points made below echo true today so I will still send this in the hope of something positive may arising from it.

I feel that as a patient it may be of interest to you to know an example of why an FND diagnosis is so difficult to believe (from my point of view of course!). The doctor I have just seen followed a similar pattern to the one highlighted in your article but the patient sees through this right away, as if the Dr is actively looking to blame a functional disorder rather than accurately investigating your tests, medical history and symptoms. None of my medical history (which is very much organic) was taken into account and results of an MRI taken a year in the past were just assumed, there was no scan or medical files there. A very viable and also organic condition which began at the same time as these attacks was also brushed aside. More time was taken in 'convincing' me that the condition is functional rather than finding out the course of the symptoms. This, of course, does not inspire a great deal of confidence.

You end your article on such a positive 'moving forward' note yet spend the vast majority of the it 'teaching' doctors how to mask the psychological elements and terms of the condition just to mollify a patient, which in itself I feel is wrong because you are 'assuming' the condition from the start of the consultation. Therefore, your consultant has already presumed the outcome and spends the remainder of the appointment picking out certain elements from your history to prove their diagnosis. Any number of conditions mimic the symptoms listed as part of FND yet there is little care in checking that it's not those conditions, rather than proving it 'is' functional. All this is seemingly determined on the raising of one leg and the strength of the other? Yet what isn't mentioned is the strength passed down from the hip which can sway the outcome.

Dental influence on neurology is also brushed aside yet a paper written in 1935 by C. Bowsler Henry (Cornell University Medical College Library), highlights the link and between neurology and dentistry. Although it primarily covers neuralgia, there are many links to case studies of patients suffering the same or similar 'functional' effects yet recover fully after having embedded or impacted molars removed. I have included the document with this email should you happen to have any interest in that matter. However I will quote this passage which I feel is important."In a number of these cases the symptoms were neurological rather than dental, and in some of them the patients had been treated by neurological methods for considerable periods of time without benefit, only to be relieved immediately as soon as the real cause was discovered. It seems to me, therefore, worth while to put some of these cases on record in the hope that similar errors in diagnosis may be averted in the future." - C. Bowsler Henry

This patients trust doctors who display integrity, accuracy and sometimes simply by seeing they are interested and want to help. It is apparent that FND is a condition that is not properly understood yet and therefore patients should be told this, not be fobbed off with 8 sessions of CBT. If 'your symptoms are very much real' as doctors hasten to tell you, surely the healthier approach would be to look at those symptoms and provide direct aid for that area and at least take steps to make them comfortable and monitor the condition. My experience with doctors so far is that either they 'sympathetically' refer you to their peer group (if they are seen privately) or they show little interest and tell you that it is anxiety, even with no evidence or history to support this. Determining a patients stress to aid this diagnosis is also an area I feel is a very inaccurate way to perform a diagnosis. If you are suffering with FND symptoms of course you are stressed and upset, it is a horrible situation to live with, that is logical and everyone would feel this way in the same situation. In the first instance I was diagnosed with 'functional stroke' by a doctor who I'd never seen and didn't even work in the hospital.

My belief is that it's a hard condition for the patient to come to terms with and accept, not because the patient want more tests or attention (perhaps some do!), but because of the manner of the consultant/consultation. I honestly believe that if this was addressed properly and better criteria was put in place to diagnose the condition it would reduce the number of unnecessary appointments and increase the chance of the patient finding the appropriate management or treatment of the condition.

I thank you for your time in reading this and hope it may have at least highlighted something useful.

Kind regards, "

This doctor then provided me with up to date documentation on the diagnosis process.. which my HFS doctor had clearly not seen. I really should designate these doctors some names, it would be far less confusing!

Of APS

So.. That was emotional turmoil for me. Doctors want this to be stress but the majority of the stress is actually coming from their inability to perform the most straight forward of tasks. Hearing nothing back from the specialist was disheartening to say the least. With the cold weather sticking around the symptoms were becoming unbearable on some days. I then noticed one day before I had a bath that my legs had gone all patchy and odd. Where the patches were, the hair had stopped growing. It was also becoming harder and harder to warm up my feet, even with USB heated slippers! So what do I do with myself now? I decided to write things up, some of the bits above have been pasted from a health forum just to save some time (and no, not one of those places where neurotic people whine on and panic at the doom of everything). It's so nice to find such a helpful site with helpful, positive and informed users. Once again I have the Internet to thank for not letting me lose hope over this whole situation. Once I'd written up what was going on, put a few pictures up, I began to receive some messages, and they all pointed to something in particular..



"Hi, I have read your blog - what a scary experience you had, my God. I wonder, if you tried to google Sneddon's syndrome - it is what Bridget from fndhope had found after a very similar experience - it's a vascular problem leading to transient neurological breakdowns and strokes, too."


"Medsoph I saw your legs and they are a tall tale sign of Sneddons. Dont be disappointed if your APS comes back negative. Some do and some just dont. Has your blood been checked for clotting time test / INR? It needs to be checked how thick it is and how quickly it clots. My GP is the one that helped me get most of my tests done and then I was referred to a hematologist where I was officially diagnosed."


"I couldn't help but ask if you have been checked for sneddons syndrome, hughes syndrome, or autoimmune disorders? Looking at your symptoms they very much resemble mine. I told doctors whatever was going on in my hands ( the early signs of Raynauds) was going on in my body particularly the brain. -was told that was impossible by at least one doctor- a few months later a hematologist said that was a good explanation of what was happening and I was diagnosed in Oct. with seronegative antiphospholipid syndrome/sneddons. oh and I would get a rash (which isn't like a normal bumpy rash but is called Livedo Reticularis or something like that. sometimes called a corn beef rash) very important part of diagnosis and may be worth looking into."


"Anonymous has left a new comment on your post:

looks like Hughs syndrome / Sneddons syndrome. Legs are livedo reticularis with neurological symptoms with positive APS (although not all patients do). Rarely diagnosed correctly. Maybe something to look into." 


I had spent so long convincing myself that this -was- FND (on the basis that I could not hope to get better if I didn't) that now having people contact me about Sneddons/APS was.. I don't even know what to think! It's like being back to square one. All I could do was go back to the GP and explain what had happened about the FND diagnosis and show her my legs, hands etc. She asked me if the specialist had seen these photos and this stuff, to which I told my GP that the specialist wasn't the slightest bit interested.  My GP didn't seem at all convinced by this diagnosis and suggested that we go back down the Raynaud's/Reumatology/Vascular route. She asked if I wouldn't mind doing some research into it to find (hopefully) the expert in such things including the Sneddons situation. She even gave me her email so that I could send all the information on to her.

Back to the interwebs, medical journals and hospital indexes. I contacted a certain hospital and they passed it on to one of the doctors there and he said 'he'd be happy to see me'. Does happy to see me, mean that you can help? Has he really read it? Is this the pound signs again?

Here's part of the email I sent along:

"Thank you so much for your help today. I have had a diagnosis of this condition being 'functional' however, after seeing some the photographs, examining my limbs and seeing me over a long period of time, my GP is unconvinced with that diagnosis and wanted to investigate the newer symptoms further from a vascular/connective tissue angle. I hope that in contacting you that the direction we should go in might be clarified. There's a lot of symptoms so I'm sorry in advance if I'm bombarding you! I've attached some photos which hopefully demonstrate things a little better. I have had a couple of people contact me via a health forum asking if I'd had Sneddon's checked but I didn't really have any idea what that was, so if you can help I'd be very grateful! My GP has re-tested for APS but we are still awaiting the results.

2013
Since taking Nifedipine, last years events/attacks have been reduced and are milder but the newer symptoms can be debilitating. Most of these began about mid January.
 
'Electric shocks' in limbs, constant 'electric current' in nose, similar in groin.
Mottling type pattern on skin. Appears mostly on the hands and legs (knees and above), gets darker in the cold.
Any attempt at physical activity results in headache/migraine, sometimes hemi-facial spasm, tremmors and nausea.
Circulation problems. Legs cold from knee down, feet remain constantly very cold. If standing for a period of time, knees swell painfully and blotches appear. This also happens if I take a shower/exposure to heat. Hair appears to have stopped growing in blotchy area.
Sudden fatigue.
Painful hand, back and leg spams. [Treating with Lyrica]
Regular foot cramping.
Heart rate fast and raising ~120bpm on standing.
Random heart palpitations at night.
Toenail drops off sometimes. Hands can also be different colours/temperatures."

So with a certain amount of skepticism, I booked the appointment. This leads us up to last week.

The Appointment

Here I am again. This being the same place that last time, a year previously, I was told that there was nothing they could do, go back to neurology. My parents had dropped me off and I assured them that I'd be fine going in alone. Sat there in the waiting room growing steadily more nervous. I can't help this now after the treatment throughout this year, I get uptight and heat rises to my face and I look like a giant strawberry even before I've gone in! Twenty minutes past my appointment time... Thirty.. Fourty.. In part of my brain I think that this could be a good sign. Often, it can be that a doctor is late because he's given the proper amount of time to a patient, not the allocated period of time. To me, that shows that they really care. A few of the staff come and check on me, to see who I'm meant to be seeing. Soon after I get called in and I can feel my face growing hotter.. If that is possible. The first part of the consultation is a bit of a blur but the specialist is nice, talking very fast at me. Then he asks me to go take my clothes off so he can look at my skin and examine me. Surprisingly, after the trauma of the endometriosis saga, this doesn't even phase me. To my horror, where I'd attempted to chemical treat some emo scars on my arm from teenage years (through paranoia of being judged by doctors, as they always look and make a facial expression of disapproval) I'd tried to find a method of making them less visible.. but in this period of time they were like beacons, glowing bright red against white skin! Oh gods. I quickly tried to explain to him what I'd done as Dad said it was best to just be honest. As I blathered my way through an explanation, he took my arm and he looked very seriously at me and said 'I'm not here to judge you, you do not need to explain this to me'. He said there was 'livedo' something on the arms, hands and legs. As I was getting dressed he asked what other doctors had said, so I mentioned that they were trying to convince me it was a functional diagnosis. He then said 'so.. that you are nuts'. I had to get him to repeat this three times to actually understand what he meant, and yes he really did mean nuts. He asked me of my understanding of the term 'functional'.. I explained my GP had said is 'they don't know' then the previous neurologist I'd seen said that explanation was entirely wrong and it was this, this and this etc. The specialist said very firmly that the term 'functional' means 'medical failure'. Was this really happening? I've been convincing myself that this is FND due to finally trying to trust a diagnosis and now all of that wall has been ripped down in an instant. Was this really happening? We then talked briefly about the other symptoms and he ordered the blood tests. He explained a little about Sneddons and Antiphospholipid Syndrome. I was still so flustered and nervous, I wish I didn't get like that.. I'm so silly. He said he would take my file home to absorb the information and 'would get to the bottom of this'.  *blink*.. Really? Do I dare hope? Then as we were ending the consultation he came round and gave me a hug... A hug! If nothing else he is a lovely man but then he showed me a copy of my email to him with his writing at the top 'APS? - Happy to see'.. That meant a lot to me because he had actually read the email and looked into it, if only a bit. I even got another hug! I think I was even more flustered then because I've not had an appointment like this.. ever. Even the nurses that took the blood were very nice and super efficient. Though on leaving, one of them was calling me Sarah, which made me worry just a little, but not much. My goodness they took a lot of blood.

This visit.. for me, was a huge breath of fresh air! I don't want to get my hopes up too much because I really don't know what I'll do with myself if he can't help me. However.. I will know more next week. Fingers crossed.

The following days since they took the blood have been rough. I've had problems with my heart just racing madly (even more than usual) for no reason, feeling very sick and today the pain in my limbs has been awful (this also coincides with 'that time' which the Mirena doesn't seem to be doing a great job of stopping). I get this sudden violent fatigue, have to keep getting into bed for a nap because I literally can't do anything else. I tried to just put my clothes away today and it took everything out of me, my chest went funny and I couldn't stand up any longer. Every joint in my body hurts and my legs feel like they have the flu... or something.. I don't know! It's all too odd.

There is hope, for now, and that's what matters.

Until next week.